New national website to support important conversations

Once a taboo topic, talking about end-of-life choices is becoming more acceptable in the Australian community. End-of-life care affects all of us, at every age.

Cabrini has launched a new website focused on supporting healthcare professionals in conducting advance care planning with people of different religious and cultural backgrounds. The project received funding from the Australian Government Department of Health. The website called ACPTalk www.acptalk.com.au is freely available to all.

Research Associate Amanda Pereira-Salgado, who is based in the Cabrini Centre for Nursing Research, led the ground-breaking project. She says it was challenging and rewarding work. “In carrying out this project, we collaborated with government, religious and cultural organisations,” said Ms Pereira-Salgado. “Our aim was to develop an advance care planning website, which provides informational support for end-of-life conversations in various Australian based religious denominations. This new website is intended to complement existing advance care planning resources by providing links to external religious and cultural resources identified during project planning.”

As a Catholic healthcare organisation, Cabrini acknowledges that religious and cultural values are important in having conversations about end-of-life choices and in advance care planning. Advance care planning is consideration of values and beliefs, and discussions about a person’s preferences for future healthcare while the person is able to make decisions. It may involve a range of people including healthcare professionals, spiritual care professionals, palliative care consultants, family and friends.

“Until now, there has been no Australian based, standalone website providing guidance about advance care planning within several religious and cultural contexts,” said Ms Pereira-Salgado. “Given the multicultural and multi-faith nature of the Australian community, there was a great need for a resource such as ACPTalk. Importantly, the religious content on the website was derived from interviews with religious leaders and has undergone extensive review by the leaders themselves, representatives of major national and State religious bodies and other stakeholders.”

ACPTalk is a nationally focused website designed to help people have sensitive conversations about advance care planning with people of diverse religious and cultural backgrounds. The website is free to use and includes the following features:

Cabrini encourages community members to have these important conversations before a healthcare crisis occurs requiring patients and their families to confront these issues, perhaps in hospital. Professor Lee Boyd, Executive Director of Nursing and the Cabrini Institute, has many years of experience in nursing care, education and research. Further, she has 21 years’ nursing experience in intensive care. She recommends the ACPTalk website as an essential resource. “The way people are cared for when they are dying is important and affects all of us,” said Professor Lee Boyd. “Although it may seem confronting, conversations about end-of-life choices don’t have to be sad or negative – in fact, they can be empowering opportunities to share thoughts about living our lives to the full and to have certainty and confidence around important decisions for ourselves and our loved ones. We need to make the right choices for ourselves about our care and to have ownership of those choices.

“Many people nearing the end of their lives may not able to speak for themselves for various reasons. Sometimes a health crisis or trauma such as a heart attack, stroke or vehicle accident occurs suddenly and unexpectedly. In such cases, the person’s choices and wishes may remain unknown and this causes great anxiety and stress for their loved ones. This can be avoided by having a simple conversation with our loved ones in our homes.”

“You are perfectly healthy . . . but I've started to bring up the idea of advance care planning with patients.”

“This isn’t something you might want to think about right now but just letting you know it’s something we can help you with, if you decide you want to have the conversation you can let me know and we can start talking about it.”

“Planning ahead is always a good idea, and can give you calmness for whatever happens in the future . . .”

Understanding the meaning of their faith

“What are your beliefs and thoughts about the future? What are your thoughts about the process of passing on? Are you fearful or worried about it?”

“What aspects of (insert faith) do you follow? Do you follow it implicitly or are there variations?”

“I know that you're (insert faith), I don't know much about your culture. What are some of the important cultural aspects that define your life and give you meaning in life? How do they relate to your medical care?”